Where Do You Find Support?

I hate to admit it, but I need some help. Actually, everyone needs support, and having a chronic condition doubles the need. But where do you go for help?

Your doctors can help in some ways, if you have good ones. They are the best source for diagnosis, testing, and medicines. In my experience, they don’t give much emotional or practical support, though. They may not be good at sharing information, either.

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Other health-care workers, such as educators, nurses, and counselors, can give good information and sometimes let you know how you are doing. Physical and occupational therapists are full of ideas on how you can do things more easily and what kind of equipment might help you. That’s all good stuff.

But what about the need for contact? For someone who understands, who may share your feelings, who can actually help? Do you have someone (or ones) in your life like that?

For me, I’m finding that the career of a writer is kind of lonely. Being a disabled writer doubles the isolation. I am very lucky to have my wife, Aisha, but I could really use more social contact.

I think that one of the best sources of support is friends who share your condition. I have two or three people I talk with on the phone fairly often, and I’m glad I have them. I met them through an MS support group in San Francisco. But they are just as disabled as I am, or more so, so getting together in person is difficult.

I do get out occasionally. Yesterday, I participated in a demonstration against the bank bailouts and had a good experience. My mom came and we had lunch together afterward. But days go by where I don’t see anyone but Aisha, or nobody at all. It gets kind of lonely.

What do you do for support? Do you feel you get the help you need with housework or shopping or other tasks? What about emotional support? Is there someone you talk with about what you’re going through? If not, what else do you do to keep going?

I notice I’m asking an awful lot of questions here. Just a couple more…

What about diabetes? Do you have diabetes friends with whom you can share, who support each other? I think this part is extremely valuable. Nobody else understands what it’s like the way other people with diabetes understand. Not your spouse, not your doctor. Not your clergy, not Jesus. Have you ever gone to a support group?

Did you or do you find it helpful?

So I encourage you to find more support, and I would appreciate any ideas you have for me on finding support and connections. You can find a state-by-state listing of support groups here.

Tax Day On another note, today is the day taxes are due. I sincerely hope you don’t have to pay any. Although some tax money is very well spent, I hate paying money for war. Maybe someday it will stop.

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tmana

I’m finding that diabetes-centric social networks can provide both emotional support and ideas for better care management — I’m actually going to be giving a talk on the topic on April 25 over at the Trenton Computer Festival. In many ways, these social networks are the digital-age equivalent of in-person support groups — and they are available 24/7/366 (accounting for leap years). Check out networks like TuDiabetes, Diabetic Rockstar, and Diabetic Connect. Diabetic Rockstar and Diabetes Talkfest both have chat rooms — while there may not always be someone available to chat with, it’s something to check out if you need a response faster than posting a question on a forum or BOF group…

Scott K. Johnson

Hi David,

I agree with you about doctors being good at what they do, but there is a large hole for the psychological support, just like you mention.

I have found that the diabetes online community (of which there are a few different forms) really serves me well. My interactions mostly involve reading and commenting on blog posts, and twitter, but that has also grown to some very valuable e-mail friendships and real life meet-ups that have been very fulfilling.

It is so true that we need to be able to communicate with people who are dealing with similar struggles.

Thanks!

sally smart

I am helping my hubby take care of mentally and physicaly challenged people, Not that he lets me do anything that is hard like lifting or work that takes a long time or strength to do, But it helps to see others who are less fortunate. Actually I got him the job by my own experiences and he has become one of the best caregivers I have ever seen (still asking me for advice on different situations). We made this job move when we knew my work place was going to mess me around when I was starting to have difficulty at work so that we would have good money coming in when it happened and it was worse then we had immagined it would be. I was harrassed in my work place rather then offered the right kind of accomadations like others were and are supposed to be and when my doctor finally said I was dissabled to some point and ordered some time off they really nuts on me so hubby (working at the same place) quit to do what he is doing now. I am being ignored and was cut off my medical leave money after three months and it has been a year now so it was a very good thing we did what we did. I still can’t believe it happened like it did but at least we made a right move for once in this care thing. I have no friends I can rely on because I was always so busy I never took the time to make friends in the work place and family all live in other provinces so support is a phone call away when I need someone to talk to. Here I mostly do coaching when needed for diet and physical activity, but that is about it. Luckily I have a good man who is so into this work and he makes about the same money as we both did at our prevoius job. He is my support mostly and I know I could use the support of a diabetic person but it is hard to think of commiting to a volenteer job to find that person just because some days are bad and few are reasonably good so I never know what to expect. I spend most of my time looking up the diseases i have and stuff on human rights in the work place to see if w

Laurie

Volunteering is great! A few hours helping folks sure makes my burden seem lighter. Despite my diabetes, I know that many folks on this planet would still like to trade places with me. That’s humbling.

I get and give support by volunteering with JDRF. My local branch is starting adult outreach for folks with Type 1 because we can get lost in the sea of Type 2s whose needs sometime differ from ours.

CDEs are great, too — they bridge the support gap between pals and physicians.

suesara47

So why is it that ALL traditional diabetic websites NEVER mention or discuss eating plans such as the vegan, no oil one promoted by John McDougall??

John McDougall and many of his patients who have made video’s called “McDougallers in their own words” claim that within 10-12 days most people can be completely off all their meds for diabetes, heart disease, high blood pressure. They will continually lose weight AND MOST IMPORTANT they have to do NO CARB COUNTING, NO SHOTS, NO PILLS and NEVER BE HUNGARY!!

So what?? Do we not believe this?? Dean Ornish apparently PROVED with A double blind controlled study years ago that you can reverse heart disease with the same diet.

Well I had a heart attack AND I went through the hospital’s training program for modifying diet, exercise, etc AND I brought up the Dean Ornish diet. AND they Hemmed and hawed and NEVER answered my question about why they didn’t support that diet?? Can’t they at least TALK about it? Can’t they be straight forward about what-ever objections they have?

I’m not saying I don’t believe all the people who reverse their diabetes with seriously controlled diets that include meat, dairy, fish and oil. My friend Greg reversed his this way in 3 months and now is taking no meds. He is his doctor’s poster child. He did this by dropping carbs down to 150 a day!.

BUT Neal Barnard with the Committee of physician’s for socially responsible medicine did a double blind study reversing diabetes with Washington university, I believe. I even wrote the American Diabetes Association people and they said that in Barnard’s study both groups on the ADA diet and Barnard’s vegan, no oil diet improved their diabetes, but the vegan group did better.

So why is this ignored as another choice for eating a healthy diet?? I of course am biased because I have been vegetarian for most of my life and I’ve wanted to be vegan for years now. It took listening to T Colin Campbell who wrote the China Study (on youtube) talking about milk protein and in particularly casein in the milk that actually promotes breast and prostate cancer growth to get me off it.

So, that’s all. I just feel like I can’t relate to these diabetes websites that only talk about one way – when obviously there are more.

At the very least it seems like we should consider the possibility that a vegan diet might be easier?? That its better for the environment, cheaper and obviously better for the animals. I’m sick of the rain forest being cut down so we can pollute the earth and ourselves with more cows, pigs, rape the oceans. Sorry to go on so….but why is there no discussion of vegan, no oil diets??

And I truly feel that throwing medicine at the problem, particularly insulin when we already have too much insulin, and now we have edema and we’re gaining weight! What could be healthy about that??You do realize that supposedly 2/3 of diabetics in the US and Canada are out of control?

Tara Dairman, Web Editor

Hi suesara47,

DiabetesSelfManagement.com actually has covered vegetarian and vegan eating plans in several places. Dietitian Amy Campbell wrote a series of blog entries called “Vegetarianism and Diabetes”–check out Part 1, Part 2, and Part 3. David Spero also discussed recent research about vegan diets and diabetes in his entry What to Eat? ADA Speakers Disagree. A search for the terms “vegan” or “vegetarianism” in our search box will turn up these and other resources.

My doctor, during my quarterly visits, is quite supportive and encouraging. And most of the time we get to be pleased that I’m doing well — A1c less than 5.5 nearly always. Sometimes, though, I do go through spells of just not caring so much — of being tired of being careful — I’ve had type 2 for more than 8 years. These spells may last maybe a month, but they always go away, and then I’m on track again.

My husband and I go to the same doctor, and this is very helpful. This doctor has told him in my presence that I am not to take care of him, that he is responsible for taking care of himself. This might not be helpful to my husband, but it really helps me.

I can discuss anything with my 40+ year old daughter, who is a gift and a friend, but lives 1500 miles away. We don’t dwell on diabetes — she doesn’t have it and so doesn’t realize the daily grind, and she has good things to talk about, such as her toddler daughter and what all her hubby and she are up to.

Support otherwise — there is none — not even from my husband who was diagnosed with type 2 about 2 years ago. I could see it coming his way — both his parents had type 2, he doesn’t exercise much, and he like only about 3 different veggies.

During those months before his diagnosis, I would comment on why I was doing certain things, how I choose different foods according to the glycemic index. etc. Mostly, I think he considered it just bugging him. Now, he ocassionaly follows my lead — if I don’t say anything about it — but mostly he doesn’t. It’s him mostly still clutching the TV remote, drinking regular cola, and eating next to no veggies.

We’ve signed up at the YMCA, which I consider quite a coup — even his driving over with me and going in the door was pretty amazing. A personal trainer who is a physical therapist talked with him to find out his limitations (arthritis, poor balance, etc.) and has given him a set of exercises that will be helpful. I know, though, that if he’s to keep at it, I must go along and exercise with him, which I know will be good for me, too. There goes my schedule for tai chi, private walks, dance DVD’s, etc.

In all fairness, I must say that I believe he might be depressed. He’s had many, many health problems in the last three or four years, including several episodes of early-stage bladder cancer. He was medically retired about 18 months ago at age 56, lost his professional identity, and is now on full VA disability. He denies depression, though, so I don’t feel that my pursuing it would be productive.

He’s really a very nice guy and a good man, but he just doesn’t seem to think it’s important to put out the effort re: his health. I can totally understand that, though, so I try very hard not to take it personally that he won’t take good care of himself. It doesn’t seem to occur to him that I’m the one who’ll be driving him back and forth to dialysis or will be the one taking care of him after his stroke.

And so, yes, I do feel somewhat resentful about how he’s not handling things. But I see no other solution with him. He won’t go to a diabetes support group because he doesn’t “need” it; I can answer any of his questions, he says. To which I bite my tongue and do not reply, “What questions?” I do get tired of being his mentor and guide. I had to learn all this stuff by reading and talking with others, so why must I then be the sole example and source of info for him? And it also means that I should always, always be very, very good, which is not any easier for me than it is for him.

There are things, though, that I do do for myself, I tutor reading and assist in English As a Second language classes. And I knit hats and scarves for the homeless — which are not desperately needed since I live in Yuma. However, I love to knit, but I’m not very good at it, so these simple things are what I can do. I go for long walks, often out in the fields, and it does my heart good to see the changes in crops and seasons. At this time, now, some of the grains are ripening, and the red-wing black birds are back. I wait for them every year. Last year I even saw one yellow-wing blackbird!

This souunds like a long whine, I know. But I also know that I am extremely gratfeul for my many blessing — for having my loving husband (despite his faults and mine), for my health and mobility, that we are no longer so scarily financially strapped, that we have a roof over our heads, that we can afford to eat healthfully, that I love salads, that our health insurance is so helpful, that our children and grandchildren are healthy, that I can see and hear, that I can read, etc. ad infinitum. And, when I’m at a low point, I remind myself of these things. And this is my support.

mary

support group with capital letters (well maybe)sparkpeople.com on the internet has a terrrifc support group and support for exercise and weight-loss and anything else you have wrong been there for 3 years coming up and lost the weight and maintain the blood sugars FREE check it outmary

CalgaryDiabetic

The Dog a really supportive lovy dovy creature. He was offended when I told him not to lick my face because I had just had cataract surgery.

Patrick

Having diabetes totally sucks! Trying to control it sucks. Controlling tri-glycerides, HDL, LDL, looking at heart disease, strokes, heart attacks, blindness, IT ALL TOTALLY SUCKS ! Ever hour of every day, innocent cuts…it’s all about diabetes. Even when I feel good, it’s all about diabetes. I have to be conscious about this lousy disease all day. My life revolves around this disease. The quality of life sucks. Pricking myself twice a day. Come on. Watching EVERYTHING I put in my mouth. Come on. Why even try? I’ve been doing everything RIGHT for a month and no improvement in my glucose levels. I just did a test and my glucose level is 211. Why even try. This disease cannot be contolled. IT JUST SUCKS.

David Spero RN

Patrick,What you’re going through is normal at times, but you can change it, and you need to before it makes you crazy. You can get control and you will – it just takes time. Do you have a diabetes educator, a nurse, doctor, a friend with diabetes, or anyone else you can talk to? Talk to someone like that, or find a person, support group, or class you can get to. You can e-mail me for some other ideas.

Maybe our DSM community has some thoughts that can help.

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